down syndrome, prenatal testing, prenatal diagnosis, reproductive immunology, special needs, early intervention, trisomy 21, down syndrome therapy, down syndrome advocacy, down syndrome support group, down syndrome development milestones

breaking stereotypes

I do NOT like reality shows. They seem insincere, tacky and contrived to me. I have (and had) enough drama in my life to last more than one lifetime, so I feel no need to seek out contrived drama in my entertainment. Insincerity in entertainment, as well as insincere people, turn me off, so that is why I can’t stomach most reality shows.

Born This Way is different (click here for the link to the show) – it is a reality show that follows 7 adults with Down syndrome to educate society about Down syndrome in ways that I hope shatter any stereotypes of people who have Down syndrome. The show is meant to inspire parents of children with Down syndrome and to open their eyes to what people with Down syndrome are capable of because some parents may fear that their child may not have the opportunity to live a “normal” life, one in which they go to college, get married, have children and live out their dreams. And it is a show which gives people with Down Syndrome a chance to share their viewpoints, to have their own voice.

Even if I didn’t have a child with Down syndrome, I would still really enjoy this show because it does open your eyes and educate you on the world of disability, even if it’s just a glimpse. And the raw emotion and sincerity of the people in this group is both heartwarming and heart wrenching. As a parent, it is easy to relate to the parents on this show, even if you didn’t have a child with a disability, you can relate to their struggles, fears and pain. And for those who don’t have children, they can relate to dreams that want to be pursued, even some dreams that parents want to caution pursuing. For all these reasons and more, I see this show having a universal appeal.

There have been critics of the show that I want to address. One has to do with not having “lower functioning” cast members and the fear that everyone will assume people with Down syndrome will all be like those on the show. Honestly, I think these people are missing the point of the show completely. This show isn’t meant to represent the entire community of people with Down syndrome. That would be impossible to do with 7 people, and I’m sure casting for this show did not have full accurate representation as a priority. But that isn’t the point of the show at all. It is meant to shatter stereotypes (especially negative ones) about Down syndrome. And I think it unnecessary to cast it to represent a whole community of people with Down syndrome as that is not the point of the show. To be frank, society may think that everyone with Down syndrome (especially those who have limited to no exposure) are low functioning so casting to include that segment may help solidify negative stereotypes rather than obliterate them. And this is still a reality show- not a documentary showing every range of capability within the Down syndrome community, which would be impossible to do well and still get to know the cast of the show.

Think about back in the 40-50s when most women were housewives. If you weren’t, there was something “wrong” with you and you were labeled as an “old maid” or something. And if someone met a woman, they would assume that she was a housewife whose sole responsibility was to clean the house, cook dinner and take care of the kids, which there is NOTHING wrong with by the way by today’s standards (and I have done both career track and stay at home and both have their pros and cons but I find staying at home with the kids more fulfilling personally)! But it is wrong to just assume that’s all you could do just because you are a woman.

It’s kind of like that with Down syndrome. Just because you meet someone with Down syndrome, you can’t assume that they aren’t educated, can’t read, aren’t interested in sports, don’t have girlfriends or spouses, don’t have jobs or their own businesses or don’t have a college degree, can’t drive, whatever! They are a unique individual and being so, there really is not much that you CAN assume about them. Sure, most individuals with Down syndrome will have challenges (some more so than others) but what human being does not? But before we had Luke, I wasn’t sure what it meant to have Down syndrome. My only references were from Life goes On and Glee. But I wasn’t sure if those actors were more in the minority or not.

But what the show has taught me is that people with Down syndrome have their strengths, weaknesses, ups and downs, complexity of emotion, dreams, challenges with their parents- pretty much similar to many of us out there- that they are human just like the rest of us. That I can relate to both the cast and the cast members on the show.

Which brings me to the second criticism, about Elena. I have heard that she turns people off and I get that. I have heard that some people think her emotional issues are because she has Down syndrome, but I believe it’s because she wasn’t accepted (and in my viewpoint, didn’t feel truly loved) by her parents and society (especially in Japan). I believe it’s this pain of rejection that has caused her emotional issues, not because having an extra chromosome somehow makes her emotional unstable. I say this because I have felt unloved at times by my parents (and still struggle with this). I can understand how judgmental and harsh a culture can be on their own kind (at least from my own personal experiences). Now, I can’t or shouldn’t generalize, but my own personal experience is that some people within Asian cultures aren’t very accepting of their own kind who do not meet expected social norms – be it a disability, can’t speak the language, doesn’t act the way they are expected to, etc. Other cultures may also be like this, but my own experiences growing up as a child, and even sometimes as an adult, have not been very positive in general (although I have some good experiences as well). I can only hope that these cultures learn to be more accepting and change their perspectives on disabilities especially.

Personally, I don’t judge someone based on the country they are from (although I am still afraid of old school Koreans because I can’t speak the language) but instead focus on whether the person I meet has a good heart, independent of the color of their skin, their religion or otherwise. But for many years, I struggled with self-loathing and self-esteem issues, and I had a hard time relating to others because I too felt like I often didn’t fit in. So growing up, I felt completely out of place with most traditional Koreans. So I can relate to Elena because she can’t relate to Down syndrome and it is obviously a big part of who she is.

Also, for Elena to have a mother who wouldn’t accept you for 20 years is very painful. Even if she told you she loved you, there is probably a part of you that didn’t believe her because she didn’t love ALL of you. And that’s why I think if you truly love someone, you have to love them for who they are completely. Otherwise, you feel that the love is conditional. And how many of us out there grew up with parents who weren’t supportive? And in result, had a low self-esteem? That is difficult to cope with, and you can see how painful it is for Elena to deal with after having been rejected for two decades. Elena, as well as other examples, are a good lesson to learn on the repercussions of not accepting your child and teaching them to love themselves and cope with their challenges. As a parent of a child with special needs, it is a good lesson to incorporate in how you see and love your child (really should be a good lesson for any parent). I think how Elena grows in the show is a strong testament to her emotional maturity, and honestly, I’m not sure if I have fared as well in my own experiences.

So don’t judge Elena for being so emotional and insecure. Try to imagine what it would be like to have a parent who didn’t accept you for who you were, and then try to understand what she is going through. Because not being accepted because you have Down syndrome is as basic as not being accepted for being a female or for being a certain race – these are characteristics one cannot change. That is a whole lot of pain (and emotion) to deal with and can often lead to someone shutting down, feeling overwhelmed or being ultra-sensitive because any feeling of rejection (no matter how slight) can bring the whole pain of being rejected by those who are supposed to love you the most. For these reasons, I can relate to Elena and hope that one day she can find peace in her heart and feel acceptance in society (which we are far away from still unfortunately).

I can also relate to Kris, Megan’s mom. I so want my children to be independent and happy. But I want to protect them from everything too- every mean spirited child who calls them a bad name, every person who has treated them unfairly, every misunderstanding that has caused them pain and any person who tries to take advantage of them. Feeling this way takes a lot of emotional energy and I know things will be much worse for Luke than they were with our older son. And this is why I feel connected to Kris because I too feel very attached to my own kids and worry what will happen to them should something happen to us because I do not know who will take care of them and love them as much as we do (a common fear for many I’m sure).

And how about Rachel? And her bravery to overcome her fears, ones she has lived with for 3 decades? Or how insightful and eloquent Steve is? And how loving Cristina is? Or Sean’s confidence in pursuing his search for a girlfriend and his path to independence? And how entertaining and talented John is? And Megan’s ability to inspire others like Elena to love themselves? Megan’s confidence and her desires to pursue all her dreams are so real, but it’s her sweet vulnerability that makes us love her that much more. For all these reasons and more, I wait with bated breath for Season Two and have high expectations for another well done series.

And can you imagine what the future holds for our children with Down Syndrome? Because when Cristina has that heart-to-heart talk with her mom, it just brings you to tears because it must have been so hard to bring a child with Down Syndrome into the world back then. Back then, the prognosis was always negative and bleak, and positive stories were almost non-existent. I feel like we have come a long way since then, and that is mainly due to the hard work of these parents who have fought so hard to give everything to their children. We have so much to thank them for, yet there is so much more work to be done. So I hugely admire the parents of the cast of the show… For loving their children no matter what and giving them the love and support they need to become wonderful human beings and to show the rest of the world just what they are capable of doing.

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Author’s Note

All suggestions in this blog are based on my own research, advice I've received from others or my own experience. If I were ever to receive an item for review, I would disclose it. This blog's full purpose is to help others and is not set up for any kind of monetary gain. If you would like, please donate to your local or national down syndrome group. Good luck!

Disclaimer

I am not a therapist, doctor or lawyer. I'm just a stay at home mom who wants to help others. That said, please take the advice on this blog with a grain of salt. What works for one child may not work as well for another child. You should refer to your doctor, dentist or therapist for anything of a medical nature or anything specific regarding your own child.